Advance Care Planning: Whose Conversation is it Anyway?

Transcription

1 CNA Webinar Series: Progress in Practice Advance Care Planning: Whose Conversation is it Anyway? Louise Hanvey Registered nurse, project director, advance care planning expert, content strategist May 24, 2016

2 The information and views in this webinar are those of the presenter(s) and do not necessarily reflect the official opinion of the Canadian Nurses Association.

3 Josette Roussel, RN, MSc, M.Ed. Senior Nurse Advisor Policy, Advocacy and Strategy Canadian Nurses Association

4 Louise Hanvey, RN, BN, MHA Project Director, Advance Care Planning in Canada Canadian Hospice Palliative Care Association

5 Objectives of the webinar What is advance care planning (ACP)? Why is it important? What is the nurse s role to engage Canadians in ACP? How is it done? What are some of the available resources on ACP?

6 Advance care planning A process of reflection on values and wishes The communication of wishes (verbal, written or otherwise) when you are capable A way to let others know your future health and personal care wishes The consideration of who will speak for you when you are no longer capable of directing your care your substitute decision-maker

7 What do we know about living and dying? Canadians are living longer Only 10% of Canadians die suddenly The other 90% need care and support as they approach death Many cannot make decisions for themselves

8 Most Canadians die of a chronic illness Other 27% Cancer 28% Heart 35% Lung 10%

9 Of 3,746 people who died in hospital Did not require decision-making 58% Required decision-making 42% Lacked capacity 70% Had capacity 30% Source: Advance Directives and Outcomes of Surrogate Decision Making Before Death

10 Why take part in advance care planning? Individuals who engaged in ACP and/or appointed a substitute decision-maker: Are much more likely to have their end-of-life wishes known and followed Have family members who had significantly less stress and depression Are more satisfied, as were their families and substitute decision-makers

11 What we know Individuals who engaged in ACP and/or appointed a substitute decision-maker: Have fewer life-sustaining procedures and lower rates of intensive care unit (ICU) admissions Have a better quality of life and death Have less costly care in last weeks of life

12 What we know The ACCEPT study: 75% of patients had thought about their wishes 85% had talked to someone about them 70% had designated a substitute decision-maker Only 25% were asked on admission to hospital whether they had previously discussed their wishes Only 30% of documented goals of care were congruent with expressed wishes

13 What we know 86% of Canadians have not heard of advance care planning. 60% of Canadians think it s important to talk about wishes for end-of-life care But only 45% have had a conversation with anyone Harris Decima Poll, 2014 for The Way Forward initiative of the Canadian Hospice Palliative Care Association Source: Harris Decima Poll, 2014

14 Why do Canadians not engage in advance care planning? Don t want to upset family: 48% Afraid of death: 45% Creeped out by the conversation: 38% Feeling healthy and don t have to: 43%

15 The role of nurses in advance care planning Nurses provide care To Canadians who are healthy along with those who are diagnosed with chronic and life-limiting illnesses Across the life span Across all settings

16 Nurses play a key role by Initiating conversations Honouring values and health-care wishes Advocating for and supporting people Joint Position Statement on the Palliative Approach to Care and the Role of the Nurse. Canadian Nurses Association and the Canadian Hospice Palliative Care Association Source: The Palliative Approach to Care and the Role of the Nurse (joint position statement)

17 The nurse s role To encourage people engage in ACP a process of reflection and communication To help people express their wishes for future care including that received at the end-of-life To ensure significant others and substitute decision-makers know their loved one s wishes

18 What do Canadians say? 88% of Canadians are comfortable talking with nurses about end-of-life care 90% of Canadians trust nurses

19 What do nurses say? Six in 10 nurses believe that people should start ACP when they are healthy. 44% of nurses say they would definitely start this conversation, given training and resources. Two thirds (68%) of nurses have discussed ACP with their patients. Source: What Canadians Say: The Way Forward Survey Report

20 What we know 18% of nurses working in primary care are experienced and comfortable discussing ACP with their patients and another 51% are somewhat comfortable. Source: What Canadians Say: The Way Forward Survey Report

21 What we know Nurses need: Information Materials for patients Guidelines on when and how

22 Who needs to do advance care planning? Everyone You never know when you may face an unexpected event or illness and will be unable to make your preferences known. You may hope that you will be able to communicate until the very end, but this is not possible for most deaths.

23 The conversation Central to advance care planning is the conversation to discuss wishes with family, friends, substitute decision-makers and health-care providers. Conversations should begin early while we are healthy and certainly at the time of diagnosis of a chronic illness.

24 Without a conversation I didn t expect him to die so soon. My husband resisted talking about dying and after 40 years of marriage I feel he let me down by not opening up and I guess I let him down for not knowing how to talk about some of the things that I needed to discuss. It would have been nice closure if things had been different in the end. I can never get that time back. CANHELP study participant

25 Advance care planning in 5 steps Think Learn Decide Talk Record

26 Advance care planning in 5 steps Step 1: Think Think about your values, wishes and beliefs. Consider how much you understand about your care and specific medical procedures.

27 Advance care planning in 5 steps Step 2: Learn Learn about different medical procedures and what they can and can t do.

28 Advance care planning in 5 steps Step 3: Decide Decide who will be your substitute decision-maker. It should be someone who is willing and able to speak for you if you can t speak for yourself.

29 Advance care planning in 5 steps Step 4: Talk Talk about your wishes with your substitute decision maker, loved ones and your health-care provider(s).

30 Advance care planning in 5 steps Step 5: Record Record your wishes. It s a good idea to write down or make a recording of your wishes.

31 Resources Partnership between the CHPCA and CARENET Overseen by a national task group interprofessional and representing many jurisdictions Funding has come from the Canadian Partnership Against Cancer, CIHR, Prostate Cancer Canada, Health Canada, GlaxoSmithKline Launched the Speak Up campaign to engage people and raise awareness about the need to discuss end-of-life care

32 Speak Up campaign Initiative to promote and facilitate ACP in Canada Tools are available on a website for the public, professionals and community organizations/agencies

33 Raising awareness Social media Media engagement Seasonal campaigns Infographics Videos Blogs, PSAs, templates Champions

34 Resources for patients, families & nurses Workbooks (print and online) Videos Wallet cards Provincial and territorial resources Cancer-specific tools Just Ask conversation card Primary care toolkit

35 Workbook for patients & families Think and write about your values and beliefs. Learn about end-of-life care and medical procedures. Write about your preferences for care. Share with your substitute decision-maker, family and health-care team.

36 Wallet card

37 Resources in provinces/territories

38 Cancer-specific resources

39 Just Ask conversation card

40 Primary care toolkit Posters Infographics Handouts for patients Info sheet for providers Workbook Videos

41 Let s talk Have you thought about your values and wishes? Have you talked with others about your wishes? Have you decided on your substitute decision-maker?

42 Thank you! It s about conversations. It s about wishes. It s how we care for each other.

43 Additional reading and references Canadian Hospice Palliative Care Association. (2013). What Canadians say: The Way Forward survey report [Ipsos Reid]. Ottawa: Author. Retrieved from %20Survey%20Report%20Final%20Dec% pdf Canadian Nurses Association & Canadian Hospice Palliative Care Association. (2015). The palliative approach to care and the role of the nurse [joint position statement]. Ottawa: Authors. Retrieved from Davison, S.N., & Simpson, C. (2006). Hope and advance care planning in patients with end stage renal disease: Qualitative interview study. BMJ (333). Retrieved from Detering, K.M., Hancock, A.D., Reade, M.C., & Silvester, W. (2010). The impact of advance care planning on end of elderly patients: Randomised controlled trial. BMJ (340). Retrieved from Harle, I., Johnston, J., Mackay, J., Mayer, C., Russell, S., & Zwaal, C. (2008). Advance care planning with cancer patients. Toronto: Program in Evidence-Based Care, Cancer Care Ontario. Heyland, D.K., Barwich, D., Pichora, D., Dodek, P., Lamontagne, F., You, J.J., Tayler, C., Poerterfield, P., Sinuff, T., & Simon, J., for the ACCEPT study team and CARENET. (2013). Failure to engage hospitalized elderly patients and their families in advance care planning. JAMA Internal Medicine, E1-10. Retrieved from Silveira, M.J., Kim, S.Y.H., & Langa, K.M. (2010). Advance directives and outcomes of surrogate decision making before death. New England Journal of Medicine, 362, Retrieved from Wright, A.A., et al. (2008). Associations between end-of-life discussions, health care expenditures. Journal of the American Medical Association, 300(14), Retrieved from Zhang, B., et al. (2009). Health care costs in the last week of life: Associations with end of life conversations. Archives of Internal Medicine, 169(3), Retrieved from

44 Louise Hanvey Josette Roussel For More Information

45 Upcoming webinar Stay tuned for the next set of webinars to be announced in August

46 Thank you!